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sitting in ICU

May 17, 2012 - 1 comments
Tags:

pulmonary embolism



I am sitting here in ICU at a very wonderful and knowledgeably staffed hospital. I came in with shortness of breath and chest pains. I was admitted for 23 hour observation of my heart because I had a few rhythm problems in the ambulance on the way to the hospital. but the next day the doctor stated that my heart was doing good so he was going to discharge me, but I explained to him that the chest pain was secondary and the shortness of breath was the main thing wrong. To appease me he stated that he would give me a VQ scan to see if I had a blood clot in my lungs, but since I take coumadin and my INR was 2.1 that the test would be negative. Well the test stated that I have a large Pulmonary Embolism (PE) in my right lung. So I have been here in the hospital in ICU since the saturday before Mother's Day, hopefully I will be going home tomorrow. I have been given pages upon pages of information on CHF, Coumadin, and living on a cardiac diet, but I have gotten anything about what life is going to be like after I get home. While here in the hospital I still get periods of shortness of breath and chest pains. I feel better while on oxygen but my O2 sats are not low enough to get a prescription for oxygen. I have seen so many articles online about PE's, in reference to symptoms, treatment and risk factors, but none of them talk about the recovery period and what to expect.
I want to know what will happen during the recovery period...hopefully the nurse will give me something to help calm my fears or reoccurrence :)
At any rate the doctor stated that I was one of those rare people that need to be maintained on a higher dose of coumadin, using an INR of between 3 - 3.5.

Went to the heart failure/transplant specialist...what a letdown

Apr 28, 2012 - 5 comments

Today I had my first appointment with the specialist and I was a little excited and a little scared, but those feelings gave way to disappointment. The good: my EF is still about 30%. The bad: my SOB is getting worst and so is my swelling. The ugly: I do not qualify for a heart transplant. I was told today that because I have multi-organ diseases that I would not be a good recipient for transplant. See, I am Diabetic (with serious complications due to very late diagnosis including - shrunken kidneys???, bladder paresis, gastroparesis, peripheral neuropathy) I also have a form of Sickle cell disease. I think I had my hopes that if things were getting worst that maybe I had some options...NOPE. I don't qualify for assistive devices such as LVAD, but I do qualify to get an upgrade to my Medtronics Secura ICD to a bi-ventricular ICD to help with pumping efficiency. The doctor was very sensitive and told me after I was trying to pick my face up off the floor "we will just have to fight back really hard with medications". So we changed from Toprol XL 125mg 2x day to Coreg 12.5 2x day, from Lasix 120mg per day to torsemide 100mg 2x day. I have no idea what I am suppose to say, I cried with my husband because a man killed his wife and committed suicide (she had late stage Alzheimer's and they had been married for over 50years) It made me realize that I wanted to grow old with my husband, we have been together for 22 years and I though I would get at least another 20 :)

Today

Jan 25, 2012 - 4 comments

Today I stayed in bed all day because I didn't feel that good it's been like this for a few days. My mom who lives with me is gone on a vacation and I miss her badly. She loves me so much and takes really good care of me. She told me to get life alert because after Christmas I passed out and bumped my head and gave myself a mild concussion, so now she is worried about me being home alone. Tell you the truth, I'm worried about me being home alone. Feeling kind of down.

I've Moved to Texas!

Dec 25, 2011 - 0 comments
Tags:

endocrinologist

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Cardiology

,

chf

,

DCM

,

texas

,

fructosaminebone marro biopsy



This was the most stressful move than I have ever had, I use to be in the Army so moving with 5 kids was no problem. Now this trip with only 2 kids was harsh.We came from Maryland then through Virginia and a snow storm we had this 26 foot truck with all of our stuff in it and our van towing behind and I was so afraid that I was going to lose everything. But we made it through the storm without a scratch! We drove 30 hours straight rotating our drivers. THen we arrived to the new house and it was not what I saw from the pictures, I was a little disappointed, because the house is so small, but my kids made it very livable for even the kids who come home for christmas or summer break. it's a little over 2000 sq but coming from a house with over 3000 sq it was hard. Any ways I had to find and change doctors, with records from some doctors, some we had to fax paper work too. Well I found a great cardiologist/EP specialist, he really understand the complexity of my heart problems...I waited in the exam room for 20 min and the doctor poked his head in and said he was breaking down my records into chapters lol. yeah it was over 500 pages. He was very good, he explained to me why he wanted to change some medicines and increasing the dosage on some medicines. His reasoning is great I agreed to his changes...at least he was replacing something already on the med list so I was happy. I found an Endocrinologist, I didn't get to see the doctor I asked for but I think the doctor I have seen is pretty good. He was one of the only Endo's that knew why I needed a fructosamine test instead of an A1c. THen I found an Oncology doctor, I went with a cancer center called Texas Oncology it is very nice most of the test can be done right on site. The doctor thinks I have a rare slow goring blood cancer, told me that after the first of the year we will be doing a bone marrow biopsy, probably in February. he wanted to wait until my foot surgery had healed. I had a bunionectomy done on both feet on in Sept and One in Nov, still wearing the big boot but hopefully I will come out of it soon. The hardest thing about moving was leaving my doctors, yes I miss my family but the doctors I had, had me feeling good so now I must go to new doctors were they may want to change my medicine or something like that. That's where I have been and how I have been doing. How are you?